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Sep 10, 2018 Latest post:
Sep 18, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated about our sweet girl. Thank you for visiting!
Gianna's medical story began when we were at the doctor for our routine 20 week ultrasound. During the ultrasound, we were overjoyed to watch our baby wiggle and squirm and move all around. After the ultrasound was completed, the tech led us into a room to meet with a doctor. The doctor came in and started giving us a speech about the reason why ultrasounds are performed - to find out if there is anything wrong. He started explaining that he wanted to talk to our OB prior to talking to us, but he hadn't heard back from him. At that moment, his phone rang and he said it was our doctor and he was going to talk to him, and he left the room. We knew something was wrong but we tried to stay grounded, so we said a prayer together as we waited for the doctor to return.
Upon his return, he started showing us pictures and explaining that our baby's ultrasound shows bilateral clubbed feet and "clenched hands." He said that with those two things, the likelihood of a serious genetic disorder increases and the most common disorder with those two symptoms is Trisomy 18. He then started talking about amniocentesis and the need to rush because we are approaching the deadline for termination. We stopped him there and stated that we will not agree to abortion for any reason so it does not need to be discussed again. We asked our friends and family to join us in praying a novena (9 days of prayers) for the intercession of St. Gianna, who is the patron saint of unborn babies.
After that, I was monitored closely and our OB was fully supportive of us. As time passed, I continued to stay healthy and our baby was growing. With each ultrasound, they commented that the baby's feet are clubbed and hands still won't open. They stated that the brain, spine, and heart look good so it would be strange for it to be Trisomy 18, and yet, that is the only condition where those two symptoms are usually present. On June 28th, we met our (SURPRISE!) baby girl early in the morning. Doctors could tell right away that there was more wrong with her, yet, they did not know what and praise God, she was breathing well and nursing like a champ. She was born with her feet clubbed, legs up by her face and unable to bend, arms extended, and hands clenched. A Physical and Occupational therapist in the hospital met with us to show us how to move her (and how not to) and showed us stretches to help her increase range of motion.
By the grace of God, we were completely overjoyed at her birth and filled with a sense of wonder and peace. Rather than being traumatized or overwhelmed, were were just thankful that she was here and okay. She had her first casting at 6 days old in which the Orthopedic doctor began the process (The Ponseti method) of correcting her feet - as well as attempting to fix her knees. That Doctor told us he would think Gianna has one of three possible diagnosis: arthrogryposis, Larsen's syndrome, or Freeman-Sheldon syndrome.
We continued serial casting with her orthopedic doctor in Tucson. After seeing her weekly for several months, he was fairly certain that Gianna has amyoplasia, the nongenetic form of arthrogryposis. She had an Achilles tenotomy when she was 3 months old, and then a few more casts. After 14 sets of casts and at 4 months old, the doctor decided that her feet were in a good position and her knees would require surgical correction. She was fitted for braces to hold her feet in their position; however, she frequently slipped out of them and her feet were regressing.
Although we were very pleased with her doctor in Tucson, we knew that Gianna was a unique case so we transferred care to Shriners Hospital in Salt Lake City. The orthopedic doctor there stated she does not think that Gianna has arthrogryposis - she thinks she has Larsen's syndrome. They took additional x-rays and found that not only are her knees and hips dislocated, but so are her elbows. Her feet had regressed a lot, so they began serial casting again, and that doctor thought she could fix Gianna's knees with casting also.
We traveled to Salt Lake City every week or two to continue casting (end of Dec 2017-Feb 2018). Her feet were in an improved position again; however, her knees were not improving. After four more casts, the doctor stated that surgical correction is necessary in order to avoid bending Gianna's femurs with more casting. She wanted to perform surgery in March so we met with anesthesiology then. The anesthesiologist was concerned that too much of her medical condition is unknown since she does not have a diagnosis. They requested we receive clearance from genetics, neurology, cardiology, and endocrinology.
It was nice to have a break from traveling then! All of the other specialists we were following up with were in the Phoenix Valley. Gianna also had weekly occupational therapy and twice/week physical therapy since the age of 7 weeks. She was making incredible progress and we love watching her grow and adapt to do things. As we continued to learn more about what is going on with her, we researched because the more doctors we met, the more we understood that Gianna is not a "typical" anything!
We heard story after story and raving reviews about Dr. Feldman at The Paley Institute. We decided that we should go for a consult prior to scheduling surgery at Shriners. We went in May and decided that we would continue treatment with Dr. Feldman. He will be doing surgery on Gianna's left foot, knee, and hip on September 26th and her right foot and knee on October 16th. Gianna and I will stay in Florida for her recovery and for intensive physical therapy, probably until the end of December. Dr. Feldman is hopeful that these surgeries will give Gianna the ability to walk!